This is an amazing day for many reasons but the biggest reason of all is that it is Braeden's 6mth Birthday today! There were hours and days where we truly didn't think that we'd have him with us for this long so to reach this milestone is so wonderful. He continues to bless and amaze us each day!
This is gonna be a long one folks and please excuse any errors, it has taken me hours to write and I've not had the energy to proofread it...
We are now 72+ hours out of surgery and I am wishing that I'd had the time (and energy) to blog over the past few days but Braeden needed me at his side and that is where I stayed. We made it back up to the second floor yesterday and even into our old room. I think that someone is saving it for us since this is the third time we've now been put in our room. Mr.B is getting stronger and is looking better and better. He got a very welcome reception on Unit 2 yesterday and everyone was thrilled to have him back so soon.
The day of the surgery was the hardest (and the 24 hrs following), we had so much anticipation up to the day. Who am I kidding? It was one of the worst weeks to have to go through up till last Friday, wearing a smile when all I wanted to do is sit and cry out of fear and worry. Mike and I got in a nice cuddle/chat with Braeden the morning of the surgery. He was happy and full of love and life when he woke up that morning so I was glad that we went up extra early to get in that time with him. I dismantled what was left of his room and packed up what needed to be packed up. Thankfully Unit 2 was able to store most of his bigger stuff like his swing and such so we didn't have too much to transport.
8:45am, We went to leave his room to go up to pre-op and B lost it. He screamed/cried the whole way upstairs (thankfully only one floor). I tried to calm him once we got up there (I actually had to ask Mike to re-count what he remembered because so much of this is a blur for me, three days ago and it is already a blur), and he calmed down somewhat. We were met by the surgical team and this is where my blood pressure reached it's peak...the Anaesthesiologist went first with his explanation (don't really remember) and then he said, and I quote, "You are aware that this is a high risk surgery? That your child is the highest risk of the highest risk? He may not come out of it the same, blah blah blah (this is where I was hyperventilating), he may have cardiac arrest on the table, he could have further strokes, blah blah blah...Switch now to me who just stood there with I'm sure a rather sick look on my face while nodding my head while thinking, "Can I change my mind now???". Then we were introduced to an ENT (have NO idea what his name was) and he said that Dr.Brooks (our reg ENT) asked him to look at B's ears while he was in surgery to see if he needed tubes in his ears. We had NO previous knowledge of this, it wasn't on the consent form that I had signed an hour before, and I barely remember the conversation with him, let alone WHY. Dr. Brindle reassured us (to the best of her abilities) and reviewed what was going to happen during his surgery. We then LET them take our child I guess because the Surgery Manager walked us out to the family room on the second floor.
The family room on the second floor was a nice (?) place to wait, it was fairly quiet at first. It is a large room with couches and a mini kitchen with a microwave. There was a ton of puzzles so Michael forced me (I hate big puzzles) to start on with him to keep our mind off of Braeden and what was happening. The Surgery Nurse told us she would come in around 11 and let us know where we were at and true to her word she was there right close to 11. She told us that the Anaesthesiologist was having and incredibly hard time getting his lines in and that Dr.Brindle had not 'cut' him yet. I know B is a hard poke but he was out, shouldn't he have been a bit easier since he wasn't moving? She told us she would return at 1pm with another update. We then heard Braeden being paged over the hospital intercom (that was funny) to return to the Unit. Then we got the page for the parents of Braeden to please come to the Unit, that made a bit more sense. We had left our stuff in his room on Unit 2 and they needed us to clear it out so we brought what we needed back to the Unit 2 room and continued on our puzzle. We were rudely interrupted by a group of four women who came into the room for a break of some sort. They weren't wearing scrubs and I think they were students of some sort but I don't know. They sat right next to us, turned on the TV and talked non-stop for over an hour on their cells and to each other. The Surgery Nurse came back in around 1pm to say that Dr. B had just cut into Braeden at around 12:15 and she figured she'd need a good three hours. After hearing that what we were going through I thought these women would be maybe a bit quieter but nope. It didn't help that my nerves were completely on edge of course...at some point they left and the G-Tube Nurse came and found us to teach Mike about the G-Tube.
Dr. Brindle came into the room at 2:15 to announce that her part of the surgery went really well and she was really pleased how fast it went. She said it was all very straight forward and that he was a champ. His stomach was a good size for the Fundo and that he did get tubes put in his ears (I still don't know why). I remember asking about the G-Tube (4 mls of water in the balloon) and not much else. We were told he'd be in the PICU in about 45 mins and the G-Tube Nurse said she'd keep us busy till then. I swear I watched that clock every minute for the next 45 minutes.
I vaguely remember asking the Nurse at the PICU desk where Mr.B was and I think she walked us to his room. When we got to the room I think he must have been upset because I can remember holding his hand, crying and saying that I was sorry (I did that a lot over the last three days). The very nice nurse Katherine walked us through his surgeries and showed us the sites, I was surprised at how small the incision was on his tummy (it is only about three inches and I was expecting five or six). I was the most upset at seeing him intubated again and seeing all of the puncture sights on his arms, legs and neck from the failed line attempts. I know that he did settle down and that I got a half smile from him which I thought was amazing. The next several hours are a blur, I know Mike left at some point to put the boys to bed so they wouldn't be stressed and I know my dear friend Lorna arrived and then Wade and Jean. Lorna took me out for some dinner since I'd not eaten all day and needed a break. We went back and Wade and Jean went home to bed and Lorna stayed on with me and drove me home around midnight. I only left because his nurse Kat told me that she would NOT leave his bedside, that she would sit and watch over him just where I was sitting. I felt horrible leaving but Mike was really concerned about me and the fact that I am averaging only a few hours of sleep a night right now. The Nurse had to be at his bedside as he was intubated and he was so drugged that I don't think he would have known if Santa was there. I came home for a few hours and got about three hours sleep before showering and returning.
When I got back in the morning Kat had her hands full and had been hopping since shortly after I left (I KNOW I shouldn't have left!). Braeden was thrashing when I walked in the room and Kat was just giving him another bolus of drugs. It is hard to know if it was pain he was in or if it was just that he was so very pissed about being intubated again that he couldn't/wouldn't settle. They added Medazalam to his Morphine and that still wasn't enough so Kat was having to bolus him with BOTH drugs every 20-30 minutes. He was just getting bolus after bolus. The main fear of course was that he would extubate himself with the thrashing and it was absolutely horrible to watch. I was on one side of him and Kat was on the other administering the drugs and we would hold him down until the drugs kicked in again. I sat barely breathing for hours watching him with the fear that the thrashing would start up again which it inevitably did. It was about 6 am that the epidural stopped working and Kat finally turned it off.
The decision was made that he needed to be extubated so the good (?) thing is that we were put on first for rounds and therefore could extubate him earlier rather than later. Kat was off at 7 am and we were cared for by Courtney for the following 12 hrs. If it weren't for his great nurses I don't think I could have survived those first two days without losing my shit completely. Nothing moves quickly in the PICU when you want it to (unless it is for urgent medical care) and it is worse on the weekends. They got rounds done on B but didn't get the tube out till after 11 am. I have to say this kid is such a trouper, he is so amazing. The Anaesthesiologist came and tried to get the epidural working again. It was the same Dr that he had for surgery but he had a much easier personality and was kind to me when he saw me. I guess when he doesn't have the pressure of having the "highest risk of highest risk" surgeries ahead of him he is quite pleasant. They had just given Mr.B a shot of Ketamine (the equivalent to horse tranqs it would seem) so he was completely out of it. He had to remove the dressing and back the epidural up to the site of entry where he finally found a kink in the catheter. The epidural catheter isn't much bigger than a thick hair so it's not a surprise it would kink. He re-dressed it all because he had to be sterile and of course the only way he could get it to work was to apply a bit of pressure to the site once he got done. He added a bit of tape to it and rolled him back onto his back and it seemed to work. I won't tell you how anal he was about the fact that the Nurse assisting him cut his tapes crooked...I actually told him he was doing arts and crafts as he got the scissors to straighten them.
After that he was extubated brilliantly and even let out the loudest cry that I've ever heard out of him, Grandma was so happy to hear it. He was still far from happy but he was visibly more comfortable. He even had a growl fest with me (it is Braeden's way of talking, he growls at me and I growl back). More hours of blur and we switched Nurses back to Kat again. Mike and I finally left around 9 pm to grab some dinner and I had asked Kat to call me if they chose to start his feeds that night. Sure enough half way through dinner I got the call that she got the go ahead to start his feeds and we went back to the hospital so that I could pump and he could have fresh EBM to start his feeds. I wanted him to have nothing but EBM for the first 24 hrs so that his poor guts could get the best treatment they could rather than starting with the formula mixed with EBM. He blew out his second IV line and it got pulled leaving him with only his ART line (take blood pressure and can be used for blood withdrawl) and his Central line. Kat put him on his tummy because he could not settle and his eyes literally rolled up in his head with the pleasure of being prone again. I felt okay to go home for a few hours of sleep again so Mike and I crashed around 1 am.
I woke at 2:30 with a start and was wide awake and thought I was just thinking about Braeden so I went back to sleep. When I went to go back to the hospital at 6 am there were two bikes in the middle of the blooming road. Turns out the sound I heard were some hooligans or something that got into my neighbours garage and took her three bikes as they left her door open and I let her know after driving by. It turns out they went through a good deal of our two block radius taking random things. There was also a car that was parked with the headlights on, window open and windshield wipers on...yup, it was stolen. Oh, don't worry the weekend get crazier.
Braeden was certainly doing better Sunday morning after having a good sleep on his tummy even though the epidural had crapped out shortly after I left the night before. He was asleep when I got there and woke shortly after. He had a good conversation with me and was quite alert which was reassuring. The main concerning thing was that Kat had been unable to remove his catheter the night before. She said she was unable to advance it or pull it out. It had been reported that they had difficulty inserting it in the OR and that they didn't/couldn't inflate the balloon at the end of it (that holds it in the bladder). We switched to Courtney again and she informed me that he would most likely be moved upstairs later that day. Yay! I had forgotten the craziness of the ICU, the constant drama there and it was a very busy weekend with people coming and going. It was disconcerting being in a room without a window and not really knowing night from day so it would be nice to be back to sunshine. Mr.B would be sleeping peacefully then wake up at full tilt screaming and arching in pain only to get a Morphine bolus and return to sleep. I asked Courtney, the Dr at rounds, and anyone else I could about why the catheter wouldn't come out and what needed to be done...no one knew! Apparently Katherine had only seen one other case of it happening in her 12 yrs, yikes. The Resident came in to try to get an IV line into Mr.B so that his central line could come out. He poked him SIX times without success. It ended with my forehead pressed to Braeden's and both of us crying somewhat uncontrollably. I let him poke him that many times because I know the risk of infection having a Central Line in and that is the only reason I didn't climb over the bed and kick him in the shins or worse. The most amazing thing about this kid? He is so very forgiving, he gets poked six times and still finds it in his heart to love me!
We did get the go ahead to go back up to Unit 2 but we had to wait until the Nurse shift change upstairs at 3 pm. It was a long wait but it was worth it! I took the little stuff back upstairs that I had kept with us and it was like coming home in a sense. We got our little room back again and it was so beautiful and sunny, not like the cave of the PICU. When it was time to move B back upstairs he was sound asleep and slept through most of the transfer and then when he had to be transferred to a new crib he woke up and was very unimpressed. It took a bit to calm him but I was able to calm him down and get us re-settled on Unit 2. He has rough periods but is doing remarkably well for the most part.
We had a busy day today, pretty much concerning everything within the diaper itself. I won't go into too much detail but suppositories were involved in some of it. The Urologist finally came to see Braeden after his Nurse Jenny and I opened his diaper and found his scrotum to be white (no blood flow)...now boys, you might want to skip this chapter. It was going white when he was bearing down in pain (or to poop) and Jenny had never seen it happen before. The Urologist arrived to try to remove the catheter (keep in mind it had been tried by three other Doctors and one Nurse by this time). He asked me for B's medical history...ummm, are you kidding me?? I asked him how much time he had and he replied (quite unimpressed at my fabulous wit) that he had as much time as needed as it was necessary. He kept saying "It is very strange that it won't come out", yank, yank. He did what he could and figured that he would go to get a wire to pop the balloon at the end of the catheter...didn't I just tell him that it had never been inflated?? He returned with supplies in hand and tried to first inflate the balloon with mineral oil, which made Braeden scream, then he pulled, which made Braeden scream, then the twisted, which...yup, made Braeden scream. He put in the wire and did some more wiggling and I stopped paying attention to him and concentrated on B's SATs instead. Finally (with much crowing) it was removed. It had crystalized around the catheter and it wouldn't fit to come out. I asked how this was possible and of course he told me that it is very rare for it to occur...leave it to Braeden to overachieve again! As for the loss of blood flow to the scrotum (it does return again), he is up for an ultrasound tomorrow to have it checked out. The hope (?) is that it was simply the catheter pressing on a vein and temporarily cutting off the supply. The risk is that it could be something more serious and he could be going back under the knife for a repair....not going there.
So the rest of my crazy weekend?? For those of you that know us, we have three senior cats (14, 15, and 16 yrs old). My cat, Oliver is a huge 22 lb Manecoon and we have two small tabby females, Bailey and Sasha. Now Bailey has been ill for some time but with B and all it's hard to concentrate on our poor sick cat. She had a hyperthyroid and I give her meds twice daily. So through all of the stress of Braeden, we've also been prepping the boys for the fact that Bailey is dying and the others are old and sick as well (Oliver is a diabetic and needs shots twice daily). Torin loves these cats (Bailey especially) like there is no tomorrow and gets quite stressed when Bailey isn't feeling well. My cats have always been outside cats and we've lived at this house for over six years now without too much incidence. Oliver and Sasha were outside late last night, as I let them out for a final pee every night, and Mike heard Ollie yeowl outside the door. Mike figured that the neighbour cat had him pinned again and swore when he opened the door. He then informed me (after telling me I didn't want to know) that a fricking Coyote had Ollie trapped at my front door. I (of course) go running out in my robe to find my cat paralyzed with fear at my front door. I got him coerced inside and Mike went to get a bat. Of course the animal had fled but Mike said he was so large that he didn't register at first what it even was. So the tragic part in this is that we've not seen Sasha again since last night. Our hope is that she fled and is holed up somewhere but the alternative is just so horrible to consider. I ask you again, when does my life slow down?? On top of all the stress that we already have, now we have this, a missing and quite possibly killed animal. One does not know if they make something stronger than Ativan (other than Vodka) but I might surely need some soon!
So if you've made it through to the end of this post, kudos to you and thank you for taking the time to read it. Please not only send your positive thoughts to my dear son but also for the safe return of the family pet (as I so don't want to and can't deal with it right now).